Emotionally-related live organ donation is different from almost all other medical treatments in that a family member or, in some countries, a friend contributes with an organ or parts of an organ to the recipient. Furthermore, there is a long-acknowledged but not well-understood gender-imbalance in emotionally-related live kidney donation. This article argues for the benefit of the concept of just love as an analytic tool in the analysis of emotionally-related live organ donation where the potential donor(s) and the recipient are (...) engaged in a love relation. The concept of just love is helpful in the analysis of these live organ donations even if no statistical gender-imbalance prevails. It is particularly helpful, however, in the analysis of the gender-imbalance in live kidney donations if these donations are seen as a specific kind of care-work, if care-work is experienced as a labour one should perform out of love and if women still experience stronger pressures to engage in care-work than do men. The aim of the article is to present arguments for the need of just love as an analytic tool in the analysis of emotionally-related live organ donation where the potential donor(s) and the recipient are engaged in a love relation. The aim is also to elaborate two criteria that need to be met in order for love to qualify as just and to highlight certain clinical implications. (shrink)

ZusammenfassungIm Spielfilm Never Let Me Go werden Klone als vulnerable und heteronome Individuen dargestellt, die zur anonymen Organspende gezwungen werden. In diesem Beitrag wird die Darstellung dieser Figuren in ihrer individuellen Entwicklung und gesellschaftlichen Sozialisation unter der Frage untersucht, welche Bezüge sich zu bioethischen Aspekten ergeben. Die Klone befinden sich in einer Situation der „privilegierten Deprivation“: Aus Sicht der Zuschauer sind sie sozial benachteiligt und können sich nicht zu komplett autonomen Wesen entwickeln, aber aus ihrer eigenen Perspektive sind sie im (...) dystopischen System immer noch „privilegiert“. Wir argumentieren, dass dieser Film auf symbolische Weise diejenigen Individuen fokussiert, die vom medizinischen Fortschritt nicht profitieren oder die nicht genügend Handlungsspielraum haben, um sich gegen geltende Praxen zu positionieren. Filme wie Never Let Me Go können deshalb ein Beitrag sein, um die Perspektive marginalisierter Personen im medizinischen System einzunehmen. (shrink)

This paper discusses the views of 17 healthcare practitioners involved with transplantation on the ethics of live liver donations . Donations between emotionally related donor and recipients increased the acceptability of an LLD compared with those between strangers. Most healthcare professionals disapproved of altruistic stranger donations, considering them to entail an unacceptable degree of risk taking. Participants tended to emphasise the need to balance the harms of proceeding against those of not proceeding, rather than calculating the harm-to-benefits ratio of donor (...) versus recipient. Participants’ views suggested that a complex process of negotiation is required, which respects the autonomy of donor, recipient and HCP. Although they considered that, of the three, donor autonomy is of primary importance, they also placed considerable weight on their own autonomy. Our participants suggest that their opinions about acceptable risk taking were more objective than those of the recipient or donor and were therefore given greater weight. However, it was clear that more subjective values were also influential. Processes used in live kidney donation were thought to be a good model for LLD, but our participants stressed that there is a danger that patients may underestimate the risks involved in LLD if it is too closely associated with LKD. (shrink)

In this article, I will explore the ethical concerns arising out of the use of preimplantation tissue typing to create saviour siblings. There are two main ethical concerns about the welfare of the child to be born as a result of PTT. The first is whether the child to be born is treated as a commodity, as simply a means to save the life of his or her sibling. The second is whether the child to be born will be harmed (...) as a result of PTT, either physically, psychologically or socially. These two ethical concerns reflect an individualistic approach to the welfare of the child, whose interests are treated as largely separate to the interests of other family members. I will argue that the welfare of the child born as a result of PTT should be conceived more broadly to include not only the child’s individual interests, but also the collective interests the child shares with his or her family. I base this broader conception of welfare on the notion of human flourishing, which recognises that the welfare of a child is inextricably connected to the welfare of the intimate collective that is his or her family. The collective interests of intimate family members are particularly relevant in the context of PTT, as the members are engaged in a shared journey to save the life of an ill child. (shrink)

Kidney donation by young children and the mentally retarded has been supported by court decisions, arguments based on obligations inherent in family relationships, an array of contextual factors, and the principle of beneficence. These justifications for taking organs from people who cannot protect themselves are problematic and must be weighed against our obligation to protect the vulnerable. A compromise solution is presented that strongly protects young children and the mentally retarded but does not abdicate all responsibility to relieve suffering. Guidelines (...) are proposed that prohibit the retrieval of kidneys from young children and the mentally retarded but permit one exception. They would allow retrieval of a kidney when the consequence to a first order relative with whom the donor has a meaningful and valuable relationship is otherwise imminent death. This would be done in accordance with additional guidelines that minimize harm to the donor. Since most patients with end stage renal disease can be maintained on dialysis the need for a kidney to prevent death should be an uncommon occurrence. This compromise is proposed as a solution to a dilemma that exists because two ethical principles are in conflict and one cannot be honored without violating the other. (shrink)

This article critically examines, and ultimately rejects, the best interest standard as the predominant, go-to ethical and legal standard of decision making for children. After an introduction to the presumption of parental authority, it characterizes and distinguishes six versions of the best interest standard according to two key dimensions related to the types of interests emphasized. Then the article brings three main criticisms against the best interest standard: (1) that it is ill-defined and inconsistently appealed to and applied, (2) that (...) it is unreasonably demanding and narrow, and (3) that it fails to respect the family. Finally, it argues that despite the best interest standard’s potent rhetorical power, it is irreparably encumbered by too much inconsistency and confusion and should be rejected. (shrink)

Parents are usually appreciated as possessing legitimate moral authority to compel children to make at least modest sacrifices in the service of widely shared values of moral decency. This essay argues that such authority justifies allowing parents to authorize a child to serve as an organ or tissue donor in certain circumstances, such as to authorize bone marrow donations to save a sibling with whom the potential donor shares a deep emotional bond. The approach explored here suggests, however, that at (...) least under some conditions, parents have legitimate authority to authorize donations forbidden by current guidelines. (shrink)

In this article we explore some of the ethical dimensions of using social media to increase the number of living kidney donors. Social media provides a platform for changing non-identifiable ‘statistical victims’ into ‘real people’ with whom we can identify and feel empathy: the so-called ‘identifiable victim effect’, which prompts charitable action. We examine three approaches to promoting kidney donation using social media which could take advantages of the identifiable victim effect: institutionally organized campaigns based on historical cases aimed at (...) promoting non-directed altruistic donation; personal case-based campaigns organized by individuals aimed at promoting themselves/or someone with whom they are in a relationship as a recipient of directed donation; institutionally organized personal case-based campaigns aimed at promoting specific recipients for directed donation. We will highlight the key ethical issues raised by these approaches, and will argue that the third option, despite raising ethical concerns, is preferable to the other two. (shrink)

Gamete donation from third parties is controversial in China as it severs blood ties, which are considered of utmost importance in Confucian tradition. In recent years, infertile couples are increasingly demonstrating a preference for the use of gametes donated by family members to conceive children—known as “intra-family gamete donation.” The main advantage of intra-family gamete donation is that it maintains blood ties between children and both parents. To date there is no practice of intra-family gamete donation in China. In this (...) paper, we investigate intra-family adoption in China in order to illustrate that intra-family gamete donation is consistent with Confucian tradition regarding the importance of maintaining blood ties within the family. There are several specific ethical issues raised by intra-family gamete donation. It may, for example, result in consanguinity and the semblance of incest, lead to confused family relationships, and raise concerns about possible coercion of familial donors. Confucian tradition provides a new approach to understand and deal with these ethical issues in a way that Western tradition does not. As a result, we suggest intra-family gamete donation could be an acceptable solution to the problem of infertility in China. However, further discussion and open debates on the ethical issues raised by intra-family gamete donation are needed in China. (shrink)

In the West, mainstream bioethicists tend to appreciate intimate relationships as a hindrance to individual autonomy. Scholars have even argued against approaching a mother to donate a kidney to save the life of her child; the request, they claim, is too manipulative and, thereby, violates her autonomy. For Chinese bioethicists, such a moral analysis is absurd. The intimate relationship between mother and child establishes strong mutual obligations. It creates mutual moral responsibilities that often require sacrifices for each other. This paper (...) argues that while aiding others is a moral duty, helping one’s family is a much stronger duty and poses no threat to one’s autonomy. For Confucianism, empathetic intimate feelings, the heart and mind of ren, rest at the root of morality. It requires that we, as moral beings, assume duties to relieve the suffering of others. The more intimate the relationship the stronger the obligation to assist. The family is a closely knitted moral community. Family members often share living resources, mutual experiences, and a sense of identity. Family members act as a social unit, and, ordinarily, mutual obligations among members have priority over duties to those outside of the family. For Confucian bioethics, family-based consent to medical treatment is regarded as natural and reasonable. Family-based decision making is a taken-for-granted norm of social life. While close family members have priority, Confucianism extends such obligations outward toward members of the extended family and the society at large. There is a general principle of gradation of love, which reflects different degrees of personal intimacy and, therefore, of moral obligation. In this fashion, Confucianism seeks to treat the whole of society as one extended family. Hence, in bioethics, mutual responsibility and family-based consent are regarded as basic principles. Through a series of case discussions, this paper illustrates that atomistic individual-based autonomy offers but a poor response to bioethical issues. (shrink)

This paper contributes to the growing line of thought in bioethics that respect for autonomy should not be equated to the facilitation of individualistic self determination through standard requirements of informed consent in all healthcare contexts. The paper describes how in the context of donation for living related liver transplantation (LRLT) meaningful, responsible decision making is often embedded within family processes and its negotiation. We suggest that good donor risk communication in families promote “conscientious autonomy” and “reflective trust”. From this, (...) the paper offers the suggestion that transplant teams and other relevant professionals have to broaden their role and responsibility for risk communication beyond proper disclosure by addressing the impact of varied psychosocial conditions on risk interpretation and assessment for potential donors and family stakeholders. In conclusion, we suggest further research questions on how professional responsibility and role-taking in risk communication should be morally understood. (shrink)

Parents’ perception of having no choice and strong emotions like fear about the prospect of living liver donation can lead professionals to question the voluntariness of their decision. We discuss the relation of these experiences (no choice and emotions), as they are communicated by parents in our study, to the requirement of voluntariness. The perceived lack of choice, and emotions are two themes we found in the interviews conducted within the “Living Related Donation; a Qualitative-Ethical Study” research program. As a (...) framework for the interpretation of these themes we discuss views of moral agency. We adopt a view in which relations are seen as constitutive of moral agency. Judging from this view, the perceived lack of choice can best be understood as a sign of commitment. We argue in this article that neither seeing no choice, nor emotions in themselves should be seen as compromises of a voluntary consent. However both experiences draw attention to aspects that are important to come to an evaluation of consent to donation. We discuss the story of one mother as an exemplary case to show how both themes can intertwine. (shrink)

Whether it is morally permissible to compel women to undergo a caesarean section is a topic of longstanding debate. Despite plenty of arguments against the moral permissibility of a forced caesarean section, the question keeps cropping up. This paper seeks to scrutinise a particular moral argument in favour of compulsion: the appeal to parental obligation. We present what we take to be a distillation of the basic form of this argument. We then argue that, in the absence of an exhaustive (...) theory of parental obligation, the question of whether a labouring woman is morally obliged to undergo emergency surgery—and especially the further question of it is morally permissible for third parties to compel this—cannot be answered via ready-made theory. We propose that the most viable option for settling both questions is by analogy. We follow earlier writers in presenting an analogous case—that of fathers being compelled to undergo non-consensual invasive surgery to save their children—but expand the analogy by considering objections that appeal to the ownership of the fetus. We offer two lines of response: the parthood view of pregnancy and chimaera dad. We argue that it is clear in the analogous case that compulsion cannot be justified. We also offer this analogy as a useful tool for assessing whether mothers have a moral duty to undergo caesarean sections, both in general and in particular cases, even if such a duty is insufficient to warrant compulsion. (shrink)

This paper focuses on voluntary consent in the context of living organ donation. Arguing against three dominant views, I claim that voluntariness must not be equated with willingness, that voluntariness does not require the exercise of relational moral agency, and that, in cases of third-party pressure, voluntariness critically depends on the role of the surgeon and the medical team, and not just on the pressure from other people. I therefore argue that an adequate account of voluntary consent cannot understand voluntariness (...) as a purely psychological concept, that it has to be consistent with people pursuing various different conceptions of the good and that it needs to make the interaction between the person giving consent and the person receiving consent central to its approach. (shrink)

In this paper, we seek to re-conceptualize the ethical framework through which ethicists and medical professionals view the practice of live kidney donations. The ethics of organ donation has been understood primarily within the framework of individual rights and impartiality, but we show that the ethic of care captures the moral situation of live kidney donations in a more coherent and comprehensive way, and offers guidance for practitioners that is more attentive to the actual moral transactions among donors and recipients. (...) A final section offers guidelines for the practice of live kidney transplants that emerge from an ethic of care. (shrink)

ZusammenfassungIm Spielfilm Never Let Me Go werden Klone als vulnerable und heteronome Individuen dargestellt, die zur anonymen Organspende gezwungen werden. In diesem Beitrag wird die Darstellung dieser Figuren in ihrer individuellen Entwicklung und gesellschaftlichen Sozialisation unter der Frage untersucht, welche Bezüge sich zu bioethischen Aspekten ergeben. Die Klone befinden sich in einer Situation der „privilegierten Deprivation“: Aus Sicht der Zuschauer sind sie sozial benachteiligt und können sich nicht zu komplett autonomen Wesen entwickeln, aber aus ihrer eigenen Perspektive sind sie im (...) dystopischen System immer noch „privilegiert“. Wir argumentieren, dass dieser Film auf symbolische Weise diejenigen Individuen fokussiert, die vom medizinischen Fortschritt nicht profitieren oder die nicht genügend Handlungsspielraum haben, um sich gegen geltende Praxen zu positionieren. Filme wie Never Let Me Go können deshalb ein Beitrag sein, um die Perspektive marginalisierter Personen im medizinischen System einzunehmen. (shrink)

In the film Never Let Me Go, clones are forced to donate their organs anonymously. As a work of fiction, this film can be regarded as a negotiation of limited agency, since the clones are depicted as vulnerable individuals. Thereby, it evokes a confrontation with underprivileged positions in technocratic societies, encouraging the audience to take the perspective of the marginalised. The clones are situated in ‘privileged deprivation’; from the audience’s point of view, they are unable to evolve into autonomous agents—but (...) from their own perspective within the dystopian system, they are still ‘privileged’. In this paper, we analyse the depiction of the clones’ personal development. Further, we examine references to bioethical aspects as well as technologies that affect the human body both on a micro and macro level—cloning and its impact on the human embryo and organ donation practised on the full-grown human body. We argue that this film as a reference for the discussion in popular culture focuses on individuals who do not profit from modern technical progress or do not have enough agency to refuse it. To make this point, we analyse the film’s fictional story, set in a form of alternate history, as a negotiation of a historical context which brings out the idea of neglected voices. (shrink)

In 2014, the first child in the world was born after live uterus transplantation and IVF (UTx-IVF). Before and after this event, ethical aspects of UTx-IVF have been discussed in the medical and bioethical debate as well as, with varying intensity, in Swedish media and political fora. This article examines what comes to be identified as important ethical problems and solutions in the media debate of UTx-IVF in Sweden, showing specifically how problems, target groups, goals, benefits, risks and stakes are (...) delineated and positioned. It also demonstrates how specific assumptions, norms and values are expressed and used to underpin specific positions within this debate, and how certain subjects, desires and risks become shrouded or simply omitted from it. This approach—which we label the Ethics of the Societal Entrenchment-approach, inspired by Koch and Stemerding (1994)—allows us to discuss how the identification of something as the problem helps to shape what gets to be described as a solution, and how specific solutions provide frameworks within which problems can be stated and emphasised. We also offer a critical discussion of whether some of these articulations and formations should be seen as ethically troubling, and if so, why. (shrink)

Background: Shortage of donor organs is one of the major problems for liver transplant programmes. Living liver donation is a possible alternative, which could increase the amount of donor organs available in the short term.Objective: To assess the attitude towards living organ donation in the general population to have an overview of the overall attitude within Germany.Methods: A representative quota of people was evaluated by a mail questionnaire . This questionnaire had 24 questions assessing the willingness to be a living (...) liver donor for different potential recipients. Factors for and against living liver donation were assessed.Results: Donating a part of the liver was almost as accepted as donating a kidney. The readiness to donate was highest when participants were asked to donate for children. In an urgent life-threatening situation the will to donate was especially high, whereas it was lower in the case of recipient substance misuse. More women than men expressed a higher disposition to donate for their children. Sex, religion, state of health and age of the donor, however, did not influence other questions on the readiness to consider living organ donation. The will for postmortem organ donation positively correlated with the will to be a living organ donor.Conclusions: The motivation in different demographic subgroups to participate in living liver transplantation is described. Differences in donation readiness resulting from the situation of every donor and recipient are thoroughly outlined. The acceptance for a living liver donation was found to be high – and comparable to that of living kidney donation. (shrink)

This paper considers the bioethics of estranged biological kin, who are biologically related people not in contact with one another (due to adoption, abandonment, or other long-term estrangement). Specifically, I am interested in what is owed to estranged biological kin in the event of medical need. A survey of current bioethics demonstrates that most analyses are not prepared to reckon with the complications of having or being estranged biological kin. For example, adoptees might wonder if a lack of contact with (...) biological kin could someday affect their medical care (or affect the medical care of their biological relatives). Estranged biological kin, such as adoptees, present us with a chance to think about human connection. After sketching several organ-donation and adoption tropes, I argue that a feminist analysis of vulnerability and dependency is helpful for understanding the confusing ties of estranged biological kin. I conclude by proposing a medical registry that would put adoptees and others in touch with their estranged biological kin on a medically as-needed basis. (shrink)

Bioethicists tend to focus on the individual as the relevant moral subject. Yet, in highly complex and socially differentiated healthcare systems a number of social groups, each committed to a common cause, are involved in medical decisions and sometimes even try to influence bioethical discourses according to their own agenda. We argue that the significance of these collective actors is unjustifiably neglected in bioethics. The growing influence of collective actors in the fields of biopolitics and bioethics leads us to pursue (...) the question as to how collective moral claims can be characterized and justified. We pay particular attention to elaborating the circumstances under which collective actors can claim ‘collective agency.’ Specifically, we develop four normative-practical criteria for collective agency in order to determine the conditions that must be given to reasonably speak of ‘collective autonomy’. For this purpose, we analyze patient organizations and families, which represent two quite different kinds of groups and can both be conceived as collective actors of high relevance for bioethical practice. Finally, we discuss some practical implications and explain why the existence of a shared practice of trust is of immediate normative relevance in this respect. (shrink)

Because it is often argued that surrogacy should not be treated as contractual, the question arises in which terms this practice might then be couched. In this article, I argue that a phenomenology of surrogacy centering on the notion of trust provides a description that is illuminating from the moral point of view. My thesis is that surrogacy establishes a complex and extended reproductive unit––the “surrogacy triad” consisting of the surrogate mother, the child, and the intending parents––whose constituents are bound (...) together by mutual trustful commitments. Even though a trust-based approach does not provide an ultimate answer to whether surrogacy should be sanctioned or prohibited, it allows for at least some practical suggestions. In particular, I will argue that, under certain conditions, surrogacy is tenable within familial or other significant relationships, and I will stress the necessity of acknowledging the new relationships and moral commitments that result from this practice. (shrink)

BackgroundThe bioethical debates concerning living donation and surrogacy revolve around similar ethical questions and moral concepts. Nevertheless, the ethical discourses in both fields grew largely isolated from each other.MethodsBased on a review of ethical, sociological and anthropological research this paper aims to link the ethical discourses on living kidney donation and surrogacy by providing a comparative analysis of the two practices’ relational dimension with regard to three aspects, i.e. the normative role of relational dynamics, social norms and gender roles, and (...) reciprocity. Based on this analysis, we derive conclusions for the framing of living organ donation and surrogacy in ethical theory and practice.ResultsFirst, our analysis emphasizes the relevance of acknowledging the complex relational implications of living kidney donation and surrogacy. Underestimating this relational dimension may not only lead to individual crises but endanger existing as well as newly emerging familial relationships. Second, we point out differences in the normative assessment of social norms and gender roles in the ethical debates about living kidney donation and surrogacy. In particular, we show how different evaluations of altruism affect the understanding of autonomy in both contexts. In addition, we sensitize for biased perceptions of gender roles. Finally, we argue that challenges resulting from unresolved reciprocity are an issue in living kidney donation and surrogacy independent of whether the exchange of body parts or bodily services is framed as a gift or commercial exchange. By pointing out the limits of financial compensation, we stress the relevance of non-material, relational rewards as potential remedy. (shrink)

Medical decisions for children are usually justified by the claim that they are in a child's best interests. More recently, following criticisms of the best interests standard, some advocate that the family's interests should influence medical decisions for children, although what is meant by family interests is often not made clear. I argue that at least two senses of family interests may be discerned. There is a ‘weak’ sense of family interests and a ‘strong’ sense. I contend that there are (...) problems with both approaches in making medical decisions for children but that the weak sense is more plausible. Despite this, I argue that claims for family interests are not helpful in making medical decisions for children. (shrink)

This discussion responds to two recent articles defending a child-centered view of parenting. Anca Gheaus and James Dwyer argue that children should be reared by the best available parent, who, in turn, should make choices based only on children’s welfare. They claim that love and respect require this fiduciary stance. However, love and respect do not justify child-centered norms. If children were competent, they would embrace norms that accommodate parental interests because they benefit from nonfiduciary rules, are grateful to their (...) parents, and reject discrimination produced by child-centered principles. Furthermore, child-centered accounts imply unreasonably broad obligations to children. (shrink)